For the child whose parent has been diagnosed with cancer, each day becomes fraught with uncertainty -- will Mom or Dad be there today when I get home from school, or back in the hospital? Will Dad be too sick to come to my softball game? Why does Mom have to take that medicine that makes her feel so bad? Isn't medicine supposed to make you feel better? All kinds of questions culminate in that most sinister and heartbreaking of all queries, lurking like a spider in the corner of the child's mind: Is my Mom (or Dad) going to die?
These were the kinds of questions that Rabbi Ed Feinstein of Valley Beth Shalom found his family coping with in 1993 when he was first diagnosed with colon cancer. His children, Yonah, Nessa and Raffi, were then ages 9, 6 and 3 respectively. The rabbi remembers each having a different reaction to his illness. "Take away a parent," he said, "and the world becomes very shaky."
Although Feinstein was successful in fighting that first battle, the cancer returned in an even more virulent form four years later, attacking his liver. Today he has been cancer-free for several years, but even now he is haunted by the effect of his ordeal on his once carefree family. It has made him acutely sensitive to the plight of others in the same situation and left him with a burning desire to do something to make their lives easier.
In December 1999, Feinstein got involved with a workshop co-sponsored by a number of local Jewish organizations, centering on the issue of cancer genetics and its effects on the Jewish community. There he hooked up with Carol Koransky, senior vice president for policy, planning and community development for The Jewish Federation of Greater Los Angeles, and Sally Weber, director of Jewish community programs for Jewish Family Service of Los Angeles (JFS). All three came away from the workshop wanting to provide something more concrete for families coping with the difficult diagnosis of cancer. Thus, The Safe Spot was born.
The fittingly titled Safe Spot is a one-day retreat designed to help families in which a parent has cancer learn how to communicate better and also take the opportunity to relax and enjoy each other's company. The event will be held Sun., June 10, at the JCC Shalom Institute in Malibu and will include a balance of informative and recreational activities for adults and for children ages 5 to 12, with free childcare available for children ages 2-and-a-half to 4-and-a-half. Fees are required only for adult participants at $18 each to cover the cost of meals (breakfast, lunch and snacks). Dietary laws will be observed, and adjustments will be made for medically necessary dietary needs.
The program is meant to supply families with a "tool kit" of coping strategies as well as fill a much-needed gap, according to Feinstein.
"Both of my experiences with cancer were very hard to talk about with my family," the rabbi said. "I assume if it was difficult for me, it would be difficult for others. Also, the only cancer support groups for kids that we could find at that time met on Saturdays. There was nothing we could find in the Jewish community that addressed what we were going through."
The event has attracted a respectable list of professionals, all of whom are donating their time. Dr. Alexandra Levine, medical director of the USC/Norris Cancer Center, will speak on "The Importance of Hope"; Dr. Toni Parker of the Wellness Community will run two workshops, one for parents on communicating with their kids and one for kids on how to communicate with their parents. Other workshops will cover issues such as what books can help children understand and cope with the challenge of their parent's illness, how to put together a family journal and ways to use Jewish rituals and traditions to ease difficult times.
"The idea was we needed something for kids and for families with a Jewish context," Feinstein said. "I used to run Camp Ramah, and I know the importance of family camps. We want The Safe Spot to be a model of this, that we heal each other, that we can each be a source of inspiration and strength."
In her work at JFS, Weber has had many years of experience helping Jewish families cope with various crises, including cancer.
"What I see with young families [dealing with cancer] is similar to post-traumatic stress disorder," Weber said. "There's the shock of the diagnosis, the initial sense of heroicism -- 'I'm going to beat this' -- and also stoicism. The most difficult thing is just to be willing to say to yourself, your children and your partner that this is what is happening and it is very scary to talk about, but talking about it is what is going to make it better.
"The purpose of [The Safe Spot] is to encourage that kind of conversation, to find serious but also playful ways of addressing children's questions."
Another benefit of The Safe Spot, she added, is the opportunity for children to talk with other kids who are going through similar experiences.
In addition to the focus on the children, there will also be opportunities for spouses to learn how to better communicate their hopes and fears. Feinstein remembers how his illness "was much harder on my wife than on me. All I had to do was take my medication and throw up; she had to deal with me and the kids and the house and everything."
Feinstein, reflecting the feelings Weber said were common in men diagnosed with cancer, said he still feels guilty over placing such a burden on his wife's shoulders.
"We're a very feminist family, but that didn't stop me from wanting to shield and protect her," he said. "You feel like you have this specter with you all of the time. Cancer says to take every moment seriously. So if nothing else, I hope couples [who attend The Safe Spot] will take each other's hand and go for a walk in this beautiful campground and have the conversation they should have had for a very long time."
While Feinstein and Weber used their personal and professional experience to help shape the event, Koransky used her talent for coordinating resources to pull everything together. She said she was amazed by the response of not only the workshop leaders but of people like musical performer Robbo (who is donating his time to provide recreation for the kids) and the Shalom Institute's executive director, Bill Kaplan, who volunteered not only the site but his entire camping staff as well.
"What is gratifying to me is how people responded, how even the wonderful person on our staff put her love into putting the brochure together," Koransky said. "One of the Federation's core values is chesed, kindness, and this event really flows from that."
All of the event's planners said they hoped to see the one-day camp expanded into additional programs. Depending on the response to this year's event, Feinstein said he hopes to be able to do a full weekend retreat/Shabbaton next year. There is also talk of offering a continuing support group for attendees and eventually programs for families where a child has been diagnosed with cancer or where adult children are coping with an elderly parent's illness. Feinstein said he would even like to see a retreat for physicians and nurses who specialize in oncology.
"While it is true that doctors can cure a lot of their patients, there's still an emotional toll. How do we help them, how do we keep them from giving up?" he wondered. "And then there's the nurses. Anyone who's ever been in the hospital knows the ones who heal you are the nurses. What are we doing to help these people?"
But those ideas will have to wait. For now, The Safe Spot will help one group of children and their families to cope better with the burdens they bear. Feinstein said he cannot wait to share how Judaism fulfills that need.
"There isn't one Jewish family out there who hasn't been touched by this disease, and that's why this is so important," he said.
For more information or to register for The Safe Spot, call Jewish Family Service at (323) 761-8800 ext. 1062. Early registration is strongly encouraged, as spaces are limited.